Tuesday, October 22, 2013

Finally, the reason for my low milk supply

Yesterday I learned the reason why I don't produce enough breast milk.

To say this was a relief is an understatement. It was equally devastating, since the problem I have is incurable.

It's called mammary hypoplasia, is thought to affect about 1 in 1000 women, and means I have insufficient glandular tissue (IGT). When my breasts were developing back in puberty, I didn't develop enough of the stuff that makes breast milk.

I figured out my diagnosis by reading this article on Reality Sandwich about milk-sharing. When I got to the part where she describes her breasts, I gasped. Other than the size and stretch marks, she could have been describing mine, and she had such a similar breast-feeding experience to me.

I had to know more.

I've now read a bunch of articles about mammary hypoplasia and have learned it doesn't matter what size breasts you have, the common factors you're likely to have are:
  • wide space (1+ inches) between breasts (cleavage has never been my strong point)
  • asym­me­try (two dif­fer­ent sized breasts-often pronounced)
  • overly large are­o­lae rel­a­tive to breast size
  • tubular shaped appearance of breasts, as they attach to the chest wall in an oval shape between the 3rd and 5th rib, rather than a circle between the 2nd and 6th rib. 
  • little or no change in breast size dur­ing pregnancy
  • little or no engorge­ment or full­ness in the typ­i­cal time period after birth
To varying degrees, I have all of these markers.

Mammary hypoplasia has four levels of severity, according to this study. Type 1 is the least severe and type 4 is the most severe. As far as I can judge, I'm a type 2. Which means I have some lactation success, but still can not and will never be able to produce enough breast milk to support my children.

Paul and I were talking last night and both expressed amazement that no one has ever mentioned this condition to me. I had lactation consultants with both L and S and this never came up.

Did they miss it or did they want to spare my feelings? It would have been so much better to have known what's wrong with me four years ago.

I wouldn't have had to smile and nod to the many well-meaning people who have advised me on ways to increase milk supply.

I wouldn't have got my hopes up with each pregnancy, thinking maybe this time my breasts would kick into action and I'd be able to fully breastfeed, only to have that hoped crushed.

I have really mourned my ability to breast feed with J. I have cried so much, feeling like a failure, and wanting better for him than I can give.

In his first few days of life he lost more than 8 percent of his body weight. That's less than the 11 percent L lost, and less than the 10 percent threshold it's usually recommended to introduce formula at, so I almost had hope.

However, he was only having about one wet nappy a day and by day five he still had urates in his nappy - bright orange streaks that show his kidneys are not getting enough fluid to clear them out. This was despite me breastfeeding around the clock, as much as I possibly could.

I made the difficult decision to introduce formula on day five. At first I only gave it by way of the lactaid, but found it so frustrating to use that I switched to bottles after a couple of days.

I tried to introduce formula as slowly as possibly, to see how much I could feed him of my own milk. Unfortunately J didn't gain weight fast enough so I had to keep increasing the formula and now he's drinking the recommended amount of that.

He still feeds off me at every feed, and overnight I try to only offer the breast, but it's mostly for comfort and for whatever antibodies I can provide.

To encourage what milk supply I do have, I'm taking Blessed Thistle capsules and Fenugreek capsules, drinking nursing tea and eating lots of flaxseed and oats.

I've found a lovely breast milk donor through the Facebook group, Human Milk 4 Human Babies, and am going to pick up my first collection of breast milk from her tomorrow. I'm so excited to see how J responds to that, as he often gets a sore tummy on formula. It won't be enough donated milk to do away with the formula completely, but it will at least give J some purely breast milk feeds.

Even though I feel embarassed sharing about my breast problems online, I wanted to do so in case someone else suffers from the same problem I do and doesn't know it.

I also wanted to share it in case any midwives, lactation consultants or other medical professionals are reading. Women can't always make the milk their babies need, and mammary hypoplasia is one of the reasons.

For these women, it can really hurt to be treated like they're doing something wrong, when their bodies are genuinely failing them.

That said, I've felt very supported by all the people I've worked with.

5 comments:

  1. Thanks for being brave, and sharing Emma. I'm sure this post will help some women out there who are also struggling with not producing enough milk, and wondering what "they are doing wrong". The donor milk sounds great - what an amazing thing to donate. All the best.

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  2. Super interesting. Thanks Emma. Your babies are so blessed to have you as their Mummy!

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  3. Good on you for sharing Emma, such a shame that no medical professionals could have at least explained it (if not helped) earlier, makes you wonder how much the "experts" really know! Also great that you can use a milk donor, what a wonderful scheme, James is so lucky that you care enough to go to so much trouble :)

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  4. Hiya have followed you for a while now like all your stuff! I have the same problem too was lucky to find out with my first baby after her losing so much weight, urates, bleeding nipples from feeding so much etc, a lactation consultant told me I seemed to have your same problem underdeveloped tissue and I ended up using a lactaid- (google medela lactation supplement device) a little bottle hangs around my neck with formula and a small tube is taped to my nipple which baby cyphins out the milk while getting my 10%ish milk at the same time I used this for 6 months with my first bub as well as my second (now 10 months) and I had more milk the 2nd time round ...like could do a little squirt (1st bub was tiny drops)lol, they reckon you can get a wee bit more every baby but never be able to fully feed. My girls drank the same amount as recommended on formula tin and whatever I had at the same time but it meant they get a wee bit of my goodness but the bonding and being able to breastfeed was awesome (even though so hoha having to make bottle then pour into lactaid then tape to nipple etc anyway long as comment sorry thought it may be helpful not many people have heard of this way of feeding even some midwives. I wrote letter to ed in the Good mag few months ago about it. :-)

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    1. Our stories sound so similar! I'm glad you had success with the lactaid. It drove me insane, but I would have loved to be able to use it. xx

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